The hard days...

Max has been having some difficult afternoons this week.  It seems the clock hits around 4:00 o'clock and he starts fussing, crying, kicking and generally losing his mind for about 4 hours. We're in the middle of another wean of his seizure medicine...and it just makes him an emotional wreck in the late afternoon and evening.  You would think this would give me enough reason to gripe, but I haven't said much about it.  I don't say much about it, because I feel bad when I gripe about the hard days.

There is a guilt that is part of the parent of a special needs child gig that manifests in all kinds of ways.  They aren't eating.  They aren't gaining weight, because they aren't eating.  They aren't sleeping, or sleeping too much.  They cry all the time, or never make a sound.  They won't do therapy.  They won't let me brush their teeth.  They won't take their medicine.  These are all things parents of special needs children will understand.

But the guilt you don't often hear people talking about is the guilt that your kid is just being difficult. We feel bad to express that this life is HARD, and not the one we necessarily dreamed parenthood would be.  We feel bad to say it is EXHAUSTING to hear screaming and crying for hours on end. We feel bad to just want it to be bedtime already so they can have their sleeping medicine so there will be some quiet for a few remaining waking hours.  We feel bad to just let them cry, because we have tried absolutely everything, and nothing is working, but someone has to make dinner and do the laundry.  We feel bad because at least they aren't in the hospital, at least they're still here, at least they can cry, at least, at least, at least.

This guilt is because we're supposed to be super, right?  We're the ones who always feel grateful our kids are alive, and relatively healthy, and made some new, albeit small, advances in school or therapy this week.  That's what we're supposed to focus on, because we're some kind of saints who got an extra dose of grace to make it so we don't run away from our screaming, crying kids.

Sure, maybe something is brewing - a cold, a seizure coming on, a tooth coming in, an infection....but maybe, just maybe they're just being difficult.  Typical kids are difficult all the time.  We hear those parents say, "I want to run away." "I need a vacation." "I am going to ship them off to grandma's for the weekend." We laugh and nod our heads, we are those parents to with our other kids.  But, if a parent of a severely disabled child says that, we feel like they're ready to crack.

But I'm here to say, it's okay to gripe.  Vent.  Let it all out.  It's hard.  You're doing the best you can.

For now, you try to take some deep breaths.  Know the crying and fussing, and bad days won't last forever.  He will laugh and smile and make you forget the stress just minutes before.  We'll dust off our super parent capes, and keep on keepin' on.  Because that's what we do, and we do it well.

Or, I'll just meet you here. . .

And I get to go first, okay?